Mar 19, 2016 (Sara)
Standard risk…those words are truly the best words we could ask for in this situation. The doctor gave us a small heart attack when she said “well the good news is that we found no leukemia in Maya’s bone marrow”….we went the entire next two hours of conversation waiting for the “…but the bad news is…”. Eventually, we realized that the bad news is the next 2.5 years of treatment. The road remains long and rocky but tonight…we pop open some bubble. Proseco and Mums Cuvée, cheers.
Much research has proven that if we stop the fight now…we surrender and Maya could ultimately lose the battle. So we continue our fight. This is far from over but at least we know we have the best chance to win….as long as we fight on. The next 2.5 years is full of many things. Today we discussed the phases. I believe everyone’s lives are full of phases…ours are now just a bit more stringent than the typical family’s I suppose. We are closing the induction phase and oh-so grateful to be moving on.
Over the last 5 weeks, we have found that doctors (or maybe more specifically scientists) don’t like to “give too much” information to the lay person. I do believe this is not because they are hiding anything but feel it may be “too much” for some families. They probably don’t want to over burden anyone. I appreciate their sensitivity but Scott and I both agree that the more information, the better we can prepare. We also understand that they probably want us to remain flexible. What the doctors don’t realize is that the more information we have, the better we are able to be lucid. The unknown is what paralyzes us.
Our Reno doctor, Dr. Salo, was kind and thorough today. She talked with us for a long time and even on this Friday afternoon, answered our many questions. We discussed the next 2.5 years and she verbally gave us an outline of what to expect. She mentioned that she likes to give “an outline” at first then discuss each phase’s road map in more detail as they come.
I can’t tell you if it is the clinician in me or the mommy in me that wasn’t satiated with the outline. I have requested road maps for each phase and while Dr. Salo agreed, she asked me to promise note to “go crazy” with all the information. I promised her I wouldn’t. We need this because Scott and I are planners. We haven’t always been, but at this point in our lives…planning makes us more comfortable. Maybe even more brave. That being said, we are also flexible beings. I understand that the road maps will only be flow sheets. They will be the pathway…not necessarily the exact journey. But at least we can see beyond the castle walls. Maya has shown great bravery especially when she is prepared (for a pokey butterfly or just a visit with a doctor)…perhaps this is nature. Or perhaps this is nurture since her parents also need to be prepared to exude their strength.
I will explain the treatment plan for ALL in another entry….perhaps with less bubbles floating in my brain and heart. For now, I will explain the next phase – consolidation. This phase is focused on making sure the leukemia cells do not come back in the central nervous system. As mentioned before…her initial spinal tap was negative. This is good but it only looks at a small amount of spinal fluid – I think 5mls (a teaspoon). Leukemia has been studied for over 5 decades…in that time they have found, if the patient is not treated prophylactically…they will likely relapse with leukemia in their brain. So. We burn that bridge and make sure that won’t happen. Aside from the last year of treatment, this is probably the “easiest” phase. The doctor called it “wussie-chemo”. Im not gonna lie, I’m ready for a break.
The Consolidation phase starts Wednesday. This phase lasts for 4 weeks and includes one infusion of vincristine via Buddha button on day one, daily oral chemo, and 3 weekly spinal tap/lumbar punctures with methotrexate (more chemotherapy) infused intrathecally every Wednesday. Suppose I’ll have to chance my work schedule…
Wussie-chemo right? Ugh.
While the news is good…this ride got real today. Thank you for all the love and support. Truly. Of we did not have all of you, our boat would capsize…I think I would drown with out you all. Thank you from the bottom of my heart. Love is life.